white spots in the white matter of my brain

Yes, it can be caused by Lyme Disease.

I do know that people who have those symptoms DO get better with proper treatment - those are all common symptoms...what I don't know is if they had those white lesions and then had an MRI after and they were gone.

Also, MS is often a misdiagnosed case of Lyme Disease.

I had/have four of the six symptoms you listed plus many more.

I had an MRI of my brain, too, but never saw the images. I just got the report.

I'm sure the report would have said if I had lesions...
Ghost - maybe white dots aren't the same as lesions? IDK.

I didn't find the mri's to be a bad experience...I've had three now...or is it four.

Lol...I almost fell asleep during one of them...

Was read as multiple punctate flairs in t1 t2 foci.made me dizzier...they said was un remarkable but consistant with early ms or small vessel vasculitis. ..i am hoping the brain can heal or at least repattern...it is what happens when lyme is on the brain. Some say abx cant get all the spirochettes out....mini and iv rociphin maybe can but dead 'cettes can blow neurons too so idk...6 in one hand have dozen crap shoots in the other....alternative guy said this ladies lesion healed after he delt with filarial worms...and ms ers have healed after bvt so idk heres hoping...

This is what the report said about my brain MRI "Scattered nonspecific foci of T2 signal predominate within the subcortical white matter both cerebral hemispheres. Findings may represent small vessel ischemic changes or sequela of migraine headache. The appearance and distribution of these lesions are atypical for demyelinating disease and this is considered less likely."

I was at the doctor yesterday and asked to see the images. I also asked him how many spots there were because about six years ago when I had an MRI of my brain I had three spots which they thought were from early childhood trauma. Apparently now I have 10 to 12 spots.

My regular doctor does not think this has anything to do with my symptoms and thinks it is a normal sign of aging. But my alternative care doctor said lyme disease can cause these and if it progresses it can turn into MS, ALS, Parkinson's, or Alzheimer's. I get so confused sometimes and don't know who to believe. I wish the medical profession could come together on lyme disease. This illness if stressful enough without them disagreeing about everything.

I guess what I am asking, is there any treatment that can improve or at least stop these white spots from progressing?

On a side note, I too am deathly afraid of MRI's but recently I have had four of them. I am not fond of the medicine that they give for MRI's so I struggle through them. The last few times I have had an MRI they laid a cloth over my eyes and had headphones on with music. This really helped.

Thanks for your help!

Amy, sorry we seemed to get caught up in the discussion of MRIs and spots in the brain.

The answer to your question is yes all of those can be symptoms of Lyme including the spots. Yes, everything can get better when you treat the Lyme.

As you read peoples posts, usually, you will see in people's signatures the diagnosis they have been given before. Common ones are Fibromyalgia, ALS, MS and Lupus. There is also a Dr MacDonald who has been studying Alzheimer's and he's found lyme in some of the brains he is studying. Some of the more prominent doctors (those that are so well know the medical boards don't take them on) tell stories

But the important thing is to start treating it. I saw that you put up a post asking for a LLMD in Minnesota and assortment said he sent you some names. Follow up on that. It's important that you detox. That info is in the "New to Lyme?" thread or you can go directly to tiredoflyme.com and she has a long list.

I would also suggest that you read posts and educate yourself. This is the most knowledgeable group around with lots of experienced people who have either gone through this or are going through it. Post questions and people will pop in if they have info for you or if you just need moral support.

Let us know how we can help,
Kim

I guess I'd have to ask what you think of my brain function? I had those and had them for many years. I have my brain MRI on a CD and it's just filed away because my doc told me that it's like they see in MS and not to worry about it since I had Lyme. I got a lot worse after that, then I healed, got reinfected and treated Lyme, but still need to treat Bart and Babs - yet I believe my brain function is pretty good, even if I do say so myself!!

I was severely compromised with my brain function. I couldn't figure out how to spell well enough for spell check to even be of help on the computer, I couldn't follow written or oral instructions, couldn't follow patterns, had no working memory and more - yet here I am after healing. I can't say that everyone that got as bad as I did will heal well (I can't see into the future yet!), but I do believe that we have to give our bodies the best chance of healing.

The bacteria that started all of this for you is still going strong in your body - that's obvious because you still have those symptoms. It's very rare for an Infectious Disease doctor to know how to treat these infections without having ILADS training. What you needed to do actually is increase what you are doing for detoxing. I was in the same boat because I wasn't detoxing when I used abx the first time around - I ended up at least 10 times worse than before I started treatments. I had to stop everything and detox for a long time to get to where I could stand to be in my own skin again. That's when my healing really started though.

I started detoxing, got my diet in a good place, and really started taking extra good care of me. I rested lots, reduced my stress levels and treated my infections and healed very well.

I'm glad to hear that you will be seeing a LLMD. Be sure to keep checking back here with us to be sure that your doc has you on a good protocol and you are detoxing well among other things.

Healing is very much out there for people - what we don't know is what we may need to do to get our healing, or how long it will take.

Speaking from experience:

I have been diagnosed with MS.
The basis for the diagnosis considers multiple things.
But, in a general sense, the findings must meet certain criteria, called MacDonalds Critera.

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Paper-TipSheet_-2010-Revisions-to-the-McDonald-Criteria-for-the-Diagnosis-of-MS.pdf

Basically, multiple findings over a period of time is usually the way it goes.

The issue with the differential between "MS" and infectious disease is, as many can attest to on here, the tests and methods used to rule things out. (Immunological assays for antibodies--The Western Blot--for example).

MS and other diseases are diseases of exclusion.
Technically speaking, the ONLY time the diagnosis of MS should be made is with the exclusion of any infectious agents that can mimic the disease. (Neurological Borreliosis--Neuro Lyme-- and neurological Syphilis are examples).
Even though, depending on where you reference the signs and symptoms, it is stated that there are SOME differences in diagnostic lab tests, MRI's, etc, I have yet to find any definitive consensus on what those differences are.

The lesions in your brain will look the same, whether it is MS (if it is a truly separate issue from something like Lyme) and Lyme. Vasculitis can be a sign of a neurological borrelia infection.

In my case, one objective sign that pointed my doctors in diagnosing MS (aside from similar symptoms as you) was the presence of Oligoclonal bands in my CSF. However, I can reference numerous studies that show the same protein bands in neurological lyme infection (it is produced when there is inflammation in the Central Nervous System).

It is a very tricky issue.

I am still pursuing my issues.
I was IGG 31/41 and IGM 39/41 Positive on western blot and am currently treating for Lyme, for the past 3 or so months.

Pat Tall said...
Hi Traveler. Please educate me regarding ILADS training. If one is a physician (MD) , how extensive is the training they offer. Is it two years or three days or one of the side classes at a conference. I've heard that the charge is not much and class is two days. It would be good for us to know OFFICIALLY what it entails, duration, internship and clarify it for us HW readers. Can you help in this area. Thanks for all you do on the forum.

Unfortunately, there is no standard training course. The doctors that go to the ILADS conferences and training get it piece by piece, one weekend/conference at a time. So we have lots of doctors that can legitimately say they have ILADS training, but they may have only had one conference so far to learn from.

Each conference will differ depending on who they have speaking, it could be a broad spectrum look at the disease in general, or some narrow aspect of it (like Neuro Lyme, or seizures in Lyme for example).

Honestly, ILADS isn't very forthcoming with information on how they determine a doctor to be 'ready' to practice, so it's once again left up to the patient to determine if the doctor actually has enough experience in the right areas to be able to help them, and when that doctor has helped them all they can and it's time to move on.

Maybe one day there will be some kind of actual qualification, as in 60 hours of instruction or something, so that the patients can know where their doctor is in their overall training. Also, whatever specialty the doc has (Neuro, GP, Gastro) that knowledge follows them in their Lyme practice as well.

As for the charges, I believe that ILADS even does 'scholarships' or grants to help the doc's pay for at least some of the cost of attending a conference and getting some training.

If anyone has a doc that is interested, please share this site with them: www.ilads.org/education/physician-training.php

Agreed, on everything you said. That's why I do my best to get good information out. It's really incredibly important in my eyes.